Living with Vulvodynia

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I can’t believe I’ve had over 200 views since yesterday. That really is incredible 😀 Thank you to everyone who has taken the time to read my musings. That’s another 200+ people who are now at least aware that Vulvodynia exists and that can only be a good thing. As I am having a fairly pain free day today I thought I would keep the momentum going by writing another post. I promise I won’t write them too often. I don’t want people getting bored 😛

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So, the day I woke with Vulvodynia. That sounds really dramatic. In truth, it was a fairly gradual process. This may get a little complication so I apologise if it doesn’t make much sense.

I actually suffered with Vulval Vestibulitis (VVS) long before my full Vulvodynia started though at the time I had no idea this is what I had.

Vulval Vestibulitis is Vulvodynia localized to the vulvar region.

I firstly realized I had problems when I was at university, approximately 6 years ago. Me and my Significant Other (SO) hadn’t been going out that long and we had just got our first bit of freedom. We were away from our parents and had our own flats for the first time in our lives so you can imagine what we did. That’s right, we had sex. Lots of it. Well what else are you supposed to do to pass the time as a student?….

At first we had no problems but after about a year I started to notice sex becoming increasingly more and more painful. I initially put this down to having too much of it and maybe becoming bored of my SO. However as time went by the pain got worse. I would describe it as a burning or cutting pain upon entry during intercourse. There was also a friction-like sensation.

I can’t quite remember what happened at that time, but I know I ended up seeing a doctor and then going to hospital. They informed me that I likely had an extra bit of skin at the entrance to my vagina that may or may not be causing pain. They said they could remove it but this would leave painful scar tissue and so their recommendations were steroid cream. Also clearly the stress from university probably meant a lot of it was in my head.

Now I have used steroid creams for the eczema on my hands for a long time and I have seen the mess it has made to my skin. There was no way I was going to put that stuff on my V-jay!

After trying our hardest to just “get over” my problem we took what I believe was a brave step for two university students who had only been together 2.5 years. We sought couples counseling from the charity Relate. Please check out their website as they are a good charity.

We saw a very nice lady who diagnosed me with and treated me for vaginismus. Yet another V condition.

Vaginismus – a condition where the muscles in the vagina tense suddenly, which makes any kind of vaginal penetration—including sexual intercourse—painful or impossible. This tension is not consciously controlled. Essentially I was subconsciously associating sex with pain and my vagina was shutting itself. Nice! I didn’t understand why that was happening but assumed it was partly to do with this odd piece of skin the hospital mentioned.

Using all the tips and tricks she taught us things did start to get better but they were never right and sex has never been particularly present or enjoyable. My SO describes my face during penetration as “a bulldog chewing a wasp.”

Now this is where the generalised Vulvodynia makes its appearance. Finally I bet you are thinking!

I was on a training course away form home for a few weeks. Within the first few days I started feeling this awful burning sensation down below. I was at this point wearing trousers and I figured maybe they were too tight. To attempt to alleviate the discomfort I kept disappearing off to the toilet or running up stairs to sit in the bathroom naked. I had my own room don’t worry! I also noticed I was discharging more than normal.

When the burning got worse rather than better I decided enough was enough and went to the local hospital. There I was informed that I had a minor infection and was given a few days antibiotics. These of course didn’t work and the burning continued to get worse. I saw my local GP who, upon examination, decided I had thrush. I was advised to get two lots of treatment and give it another week. She also took swabs just to be on the safe side. The pessaries and the cream seemed to do nothing and if anything made things worse. By now I was regularly on the phone to my SO crying whilst I lay in bed fanning my vagina with a book!

The swabs came back negative so I was told to try a different fungal cream and see how I got on. I went on holiday to Spain, where the condition did ease however that was probably because I was relaxed and not sitting down as often. Upon returning to England I was still suffering so back to the Doctors I went.

I can’t remember how many examinations and swabs I had done. Every single time they put that damn speculum in me I nearly hit the roof. One time the strength of my vaginal contractions forced it right off the bed! It’s funny now. It wasn’t at the time believe me. I had several medical experts tell me that “there was nothing there” and “maybe it will go away if you don’t think about it.” Not helpful. I was also prescribed Vagisil cream. Do not use this cream if you have similar problems to me. I suffered what felt like minor chemical burns. Evil stuff.

So after spending more than 6 months getting nowhere and having to make some of the lifestyle choices I mentioned on a previous blog post I was finally referred to the hospital. Yippee! I was finally going to get to see someone for a diagnosis.

I went along and after, you guessed it, another internal examination (this one included my bottom ) I was told I had Vulval Vestibulitis and my choices were surgery or a low oxalate diet.

I instantly had two concerns from this diagnosis.

1) I had, by now, research Vulval Vestibulitis and I realised that my sex problem was most likely down to that. The original hospital wasn’t actually that far off at all. However I knew that my other symptoms were different and I felt it was silly to dive straight into an operation without trying other routes first. This is my vagina we are talking about! I was sure I had general Vulvodynia as well as Vulval Vestibulitis.

2) Surgery vs diet change. Those are very polar treatments. How can they both treat the same thing effectively? Surely I should at least try the diet first?

I said as much to the consultant who at which point did something that upset me more than anything and this is quite silly of me. He stood up, shook my hand and said, “I really feel for women who suffer with this condition. I don’t know how you manage it. Good luck” or something of that nature. And that was it. I was discharged back to my doctor. I cried a lot that night I can tell you.

Well of course me being the difficult bugger that I am, and of course me having a biochemistry degree, I decided to research the low oxalate diet. At that time I could find no conclusive evidence that this diet really helped women with VVS. Kidney stones, yes. Interstitial Cystitis, probably but nothing conclusive for VVS. (Please note some women have said that it has helped them. For me personally I weighed up the stress of the diet vs the likelihood of success. This does not mean it would not work for you. I am not a doctor.)

The low oxalate diet involves avoiding certain fruits and vegetables, some nuts, some dairy products, some grains and all soy products. This list varies from Website to Website and I was supposed to do all this on my own with no dietician support. I decided it was too much and my doctor agreed. The stress it would cause plus some of the other health conditions eating such a limiting diet might cause worried me. Plus I had already started to weigh up the option of going private and had found the consultant I wanted to see. My doctor agreed with my decision, admitted there was little else he could do and he referred me.

I was about to get some posh private treatment and a maybe finally a cure! Or so I thought…..

To end on a positive note – My star of a SO actually proposed to me in Spain even with all these problems and obviously I said yes. 😀 I would therefore like to take this moment to thank him for being a truly wonderful person and to say I love him very much. I’m sorry our sex life is on the internet.